Breast cancer advocates discuss need for more programs and research for Black women

According to the Centers for Disease Control and Prevention, Black women are 40 percent more likely to die of breast cancer than white women. Disparities in breast cancer care affect every part of the way Black women experience the healthcare system, and the solutions will require continual, dedicated attention to the issues that stop Black women from getting the same level of care as their white counterparts.

LBBC board member and founder of the Chrysalis Initiative, Jamil Rivers, spoke to two other leading advocates for Black women with breast cancer — Ricki Fairley, founder of Touch, the Black Breast Cancer Alliance, and Maimah Karmo, founder and president of the Tigerlily Foundation — about the what needs to change for Black women to finally see equitable care, from the way we do research to the racial make-up of board rooms.

Jamil, Ricki, and Maimah discuss why they are participating in Knowledge is power: Understanding Black breast cancer this October and the importance of programs that spotlight Black women connecting with other Black women and speaking directly to their experiences.

Knowledge is power: Understanding Black breast cancer is a series of conversations that will be hosted by LBBC Thursdays in October. Check back for more information.

Jamil Rivers

Founder, Chrysalis Initiative; LBBC board member Jamil Rivers was diagnosed with de novo metastatic breast cancer at age 39. Determined to do everything to be here for her children, husband, and family, she researched vigorously how to best prepare for breast cancer and treatment. Jamil launched The Chrysalis Initiative, which provides mentoring and resource navigation to women with breast cancer and engages in outreach and education for African American women to assess their breast cancer risk. Read more.

Maimah Karmo

Founder and CEO, Tigerlily Foundation
Maimah Karmo is the founder and CEO of the Tigerlily Foundation. Maimah was diagnosed with stage II breast cancer in 2006. While undergoing chemotherapy, she made a promise to God that if she survived, she would create an organization to educate, empower, advocate for, and support young women affected by breast cancer and Tigerlily Foundation was born. Tigerlily provides breast health, educational, empowerment wellness and transformational programs to young women. Read more.

Ricki Fairley

Founder and CEO, Touch, The Black Breast Cancer Alliance

As someone who has been through stage III, triple-negative breast cancer, Ricki Fairley’s personal purpose is to bring action to eradicating Black breast cancer, and supporting fellow women through their breast cancer experience. Ricki is an award-winning marketing veteran who has transformed her strategic acumen into breast cancer advocacy. Ricki recently co-founded Touch, The Black Breast Cancer Alliance to address Black breast cancer as a unique and special disease state, with the overall goal of reducing the mortality rate for Black women. Read more.

 

Jamil Rivers (00:00):

Hello, my name is Jamil Rivers. I was diagnosed with metastatic de novo breast cancer in 2018. I am a Young Advocate alum with Living Beyond Breast Cancer and I am also a board member. So I feel that Living Beyond Breast Cancer is my family. They have taught me to be an advocate and my advocacy is really focused on making sure that disparities when it comes to metastatic patients and Black breast cancer patients are addressed. I deal with that on the policy level and also working with various support organizations.

According to the Centers for Disease Control, Black women diagnosed with breast cancer are 40 percent more likely to die from the disease than Caucasian women are. Black women are often diagnosed at more advanced stages, which require more extensive and expensive treatments, prognosis is poor, and are often diagnosed younger with more aggressive breast cancers.

We're here to talk about today the symposium that was my idea, just from taking care of myself and on my breast cancer journey. I began mentoring and coaching other patients with breast cancer and after a while it grew to about 50 women. And I thought, well I really would like to help other women, but I can't take on anymore. I went to Living Beyond Breast Cancer and said, “You know, there really is a need here for us to provide more support and education and information to Black women who are diagnosed with breast cancer in order to really address these disparities.” LBBC said yes, and so upcoming in the fall, we will be having an African American symposium targeted to support Black women and men newly diagnosed with breast cancer.

I am honored to be joined by two great breast cancer advocates and leaders, Maimah Karmo, the founder of Tigerlily Foundation, a national breast cancer foundation providing education awareness, advocacy, and hands-on support to young women between the ages of 15 and 45 before, during, and after breast cancer.

And Ricki Fairley, who has been involved in breast cancer advocacy for many years and who recently co-founded Touch, the Black Breast Cancer Alliance, to drive awareness of the unique diagnosis of Black breast cancer with the overall goal of reducing the mortality rate for Black women, their collaboration and accountability. Please go to LBBC.ORG to read more about these two amazing women

Our discussion today is going to focus on what we can do to change this very disturbing reality that faces Black women with the breast cancer diagnosis. Thank you, Maimah and Ricki for participating in this important discussion.

Maimah Karmo (02:51):

Thanks for having us and for being a great model in this space, Jamil.

Jamil Rivers (02:55):

I am so excited that both of you I'm joined on with me and LBBC to be community partners for this symposium that is based off of my cancer coaching model with the Chrysalis Initiative.

There is a lot of information about breast cancer, many organizations that focus on providing general education, but let's talk first about what's missing. Why are there such great disparities for Black women with breast cancer. Maimah, do you want to start?

Maimah Karmo (03:27):

I think people often don't see women that look like them in this space. That's one of the biggest barriers to care, seeing Black physicians, seeing Black woman in media.

When I first got diagnosed at 31 years old with TNBC, there is nobody who I saw that looked like me from either end — as a patient or a physician or even in the advocacy space. And so what I think is you have to figure out, for me, is how do I give other young women what I did not have and why are there such disparities? I think you have to figure out ways to be the change we want to see in the world.

I was a one woman army. I had my daughter, who was three years old, I had no money, I still worked full time. I didn't understand all the terminology and the words, and there was no one teaching me what to do, how to navigate that space. Tigerlily was birthed out of my promise to God that if I survive, I would give my life to serve other people going through breast cancer, other women. And then I began to learn about disparities. Being a woman, being young was a really big disparity, and not having support services, and being women who are becoming metastatic patients. I wasn't taught about meds at an early stage during breast cancer. And then finding out that Black woman had a 40 percent higher death rate. As I began to learn how to use my power, I learned that was what advocacy was: how to use your privilege for power. My privilege was that I was still alive, and so Tigerlily really was birthed out of my own experience to reach women who are younger, metastatic, and Black, and having them learn how to harness their power for good to change Black women's outcomes and save lives.

Jamil Rivers (05:07):

Got it. Ricki, what are your thoughts?

Ricki Fairley (05:10):

I was given 2 years to live with metastatic triple-negative breast cancer, and I'm on 8. I know that God left me here to do this work, and he gave me a purpose. My breast cancer gave me a purpose.

And I really do believe and say this all the time — you guys know it — that Black breast cancer is a different disease. We all work really hard every day, but the death rate isn't changing, so I want to focus on how we change that number and those hard, the horrible numbers that we face. If you think about it, I don't think we know enough about the physiology of Black women, we don't really know a lot about the science. And why is that? It's because clinical trial participation by Black women is less than 3 percent.

I want to focus on what is the science that’s going to change the numbers. And until we have drugs that match our different physiology and understand that better, we're still going to have a higher mortality rate. I think if you look at health disparities, and one of the best things about the COVID era is that the health disparities that we've been living with our whole lives — everybody that we know, everybody Black has experienced it — it's now on the table. The time is now to put it out front and center and talk about it.

But I think we have to look at the science. A lot of the work that we're doing is to try to get more Black women to participate in clinical trial research. Because if we don't participate in the research, we're not going to understand our physiology to get to the science, to get to the drugs that we need.

So I think we need to really dig into what that is. And we all work in trying to recruit for clinical trials. Every pharma company does it every day. They try to recruit for our clinical trials, but what's happening isn't working, you know what I mean? So are we talking about it the right way? Are we expressing it the right way?

I'm a marketing person by trade and our messaging that we're using right now, isn't working. So we have to figure out what that is. What do we need to say to get over the placebo barrier, all the myths, the bad history of science that we've experienced as a race and even some of the social determinants of health, like transportation, childcare, all those things that are barriers to clinical trial research participation. How do we get over that and give them the right messaging to get the participation levels that we need to get the science right?

Maimah Karmo (07:37):

Can I answer that? I think Ricki, that's really important. I think it's really important. I think, to add to that, you can't ask someone to be in a trial when they don't trust, like when there's trauma. I think beyond saying to people, to Black woman, give me your data and your genetics and give me all your information, we can forget the history of what happened that caused the mistrust and the trauma. Addressing the trauma is really important, and we'll be talking about that at the conference. And the barriers are, I'll be honest, they're not barriers that can't be overcome the problem is they're not investing in people, haven't been investing in Black women and Black breast cancer.

As we launched our inclusion pledge at Tigerlily less than 2 months ago, we've seen industries pivot in 2 months that were saying before that they couldn't do something, it just wasn't possible. So the issue isn't that it's a barrier, it's not a barrier, it's a matter of are we important enough as a color, people, women, the population that you can invest your money where your mouth is. Women have tremendous buying power in this country, in the world. And how are we as advocates going to use that power or withhold it if we don't get equity as we deserve?

Again, the barriers are not barriers to investing in our communities to make industry and partners and all the systems that are broken invest in us, and then address the trauma of why we don't trust, why we don't engage, why we are not at the table.

I think Ricki, what you're saying is, and you're so right, Black breast cancer is its own cancer. And the trial recruitment process is so important, but we can't forget why it happened, and we can't forget that you have to put your money where your mouth is as partners and industry partners.

Jamil Rivers (09:22):

Definitely multilayered as far as the challenges that we're talking about, but I definitely think that we should treat Black breast cancer as its own individual subtype in order to really develop focused, targeted solutions in order to address all of those various social determinants of health that impact Black people differently than their white counterparts, to talk about really investing in the Black community, to create treatments that actually provide treatment for their specific breast cancer.

We do find that Black women tend to be diagnosed younger, we become metastatic faster, our tumors become aggressive sooner. Are there biological differences? We do not just need to recruit Black people for clinical trials, but also create the investment opportunities for their, for Black bodies to be studied and for us to really have a comprehensive strategy about resource, supports, the biological treatment aspects where we're creating this type of taskforce as far as all the various aspects of making sure that Black people get the best optimal care possible because Black lives matter. We really need to — the same way that we're having this country conversation — we can start thinking about not just trickle down treatment and care for Black people, but really thinking about how can we make sure that they're getting the best possible outcomes. That's really important.

Let's talk for a moment about the current situation in healthcare systems and the systemic change that is needed. Ricki, did you want to touch on that first?

Ricki Fairley (11:05):

Sure and I want to continue to have a conversation. So if you think about it, 20 or so years ago the AIDS revolution happened, and it was the AIDS advocates that went after pharma and put on a movement to get rid of AIDS. And guess what? AIDS is no longer a fatal disease. People live with it every day, it's now a chronic illness. The science happened; it was the advocacy group, though, and the advocates with the AIDS quilt and that movement that really got the movement started and made pharma react to it. And I don't see why we can't do the same thing.

Jamil Rivers (11:43):

We absolutely can. I totally agree.

Ricki Fairley (11:45):

And I think altogether, as an Alliance, we have to work together and collaboratively go after that work and make that happen. I do think the time is now. I think there have been a lot of systemic issues. Well, frankly, if you look at most pharma companies who's managing the farm, right? And that's at every corporation, right? I think we're now getting more people on boards, more people at high levels and really good work done at like Merck and Genentech, and I don't want to mention all the companies, but we are seeing some diversity in their managerial ranks, but that's what it's going to take: people in powerful positions within those companies to make the work happen.

If we can encourage that in our work as well, but I think it's really getting people to focus and give them something to focus on. I use AIDS as an example, but it can be done. I mean, we can put people on and it's interesting that we can't cure cancer yet, but it's a huge industry, right? So

Jamil Rivers (12:45):

But they can try to control it. Like how they’re dealing with HIV, AIDS and diabetes and high blood pressure all those areas then,

Ricki Fairley (12:53):

Right. How do we make it a chronic illness? We have to do the work, we just have to do the work. And I think the three of us in our little army that we’re forming around us, have to do that work and push the envelope every day and fight like girls every day, like we do, and keep bringing it up, keep bringing it to the table.

Maimah’s inclusion pledge was such a great platform to make this discussion happen and engage everybody in our little fight here, our big fight here, to put it on the table and make people commit to making a difference, but we all just have to do that in everything that we do. And at the end of the day, it's going to be the science that changes the mortality numbers as it did for AIDS and diabetes and high blood pressure.

Jamil Rivers (13:39):

Right. And we need innovation. From my personal perspective, I think the breakdown that I've seen only being in this area in the past few years is that healthcare systems tend to operate in silos. The burden is on the patient in order to understand and be knowledgeable about all the available treatments and resources, and things like that. I do think that clinical trials, the treatments, and even support resources really should be a comprehensive model. And that's what I try to do with the Chrysalis Initiative and what the symposium is based off of — meaning that it's all encompassing, it's not just one aspect. And really we have to start making those investments and go to the community.

We found that it's most successful, if you think about some of those models that have been really successful with addressing the disparities in their area, they're going to the community, they're doing those assessments and finding out specifically what their patients need in order to stay on that optimal continuum of care.

Maimah, can you talk about the Inclusion Pledge and why it initiated? Why it is so important? And also touch on some of the challenges that you see with the systemic change that's needed in our health care systems.

Maimah Karmo (15:01):

I think, systems wise, we have to ensure that every system that affects Black woman has to change. We have to change. I mean, if you go to a Black community that's underserved, what do you see on the street corners? Liquor stores, barbershops, chicken stores. You go to a white community or higher end community. You see a Whole Foods and farmer's market. It's like Black skincare products, haircare products, it's food, it's rural communities, it's — to your point Jamil — we have to be able to be on the ground in those communities.

One of our commitments as an organization is helping people to understand and helping pharma and industry to go into communities where people of color are dying the most, where they need to get support services and train them. For me, being a founder of Tigerlily, it took me almost 13 years to get to be where I am today. That's 13 years of begging for funding, asking for support, asking to be at the table, showing up no matter what, and being asked constantly, “Why are you here? Oh, she's here again?” I just made myself a person that was not going to leave.

Looking at disparities, we have to go to communities of color that are facing these disparities and that are rural and underserved and invest in them, mentor them, give them funding to support them. I've seen people funding large organizations, but I had to beg for money at a quarter, a fraction of what I was seeing other groups get. If we want to see a woman of color grow on the ground, we have to invest in people they trust in these smaller, micro nonprofits. Investment, meaning money, investment meaning mentorship and meaning opportunity.

Within the Inclusion Pledge, my goal is to ensure that every system — to my point earlier — that affects Black woman has to change. Communications, clinical trials, engaging on the ground, we have to get advocacy groups more involved, more inclusive. Like now you're on the board of Metavivor. We’ve got to see more Black faces at every table for systems that are broken to change. So we're looking at targeting all these different systems and meeting with partners and saying, here's how you get involved and change it within your group to impact Black breast cancer overall.

It's been really powerful. We’ve seen amazing change and I never imagined being a young woman who's a first generation immigrant who came here at 15 years old, that I could help change global systems. The power in advocacy, for me, is paying that forward to other young women and saying, you have the power to use your voice to be fearless even when you're afraid, speak up, stand up and show up and ask those who are the powers that be to recognize that you are a power to be, and you are a power in your own self and using your voice for change.

I think through our work we've educated Black woman across the country, through our cohort program, through our alliances. I love collaboration, and I see myself as being a firefighter. Whenever I see someone in trouble or having a need, I go and pull them out of the fire. And I say, “You're on my table. How can I feed you, empower you and lift you up?”

This symposium really is a way to bring us together in sisterhood, in collaboration, and looking at, not just the problems, but how to fix the problems in a way that is — what I believe in is having these smart goals — being specific, being measurable, and being tactical and reaching the solutions for Black woman and to add to this Black breast cancer.

Jamil Rivers (18:35):

The African American symposium, we understand that this is a multilayered problem, like you mentioned, I'm on the board of Metavivor and we're really focused on studying Black breast cancer and empowering Black researchers in order to study these disparities and differences so that we can understand them.

However, the African American Symposium with Living Beyond Breast Cancer is more empowering the patient, providing them with that information because they're newly diagnosed. We're really prioritizing newly diagnosed Black patients in order for them to understand what they don't know. This is a totally new frontier that they're going into.

I find working with so many Black people that are impacted by breast cancer, they always think back about how they potentially got off track, how they were susceptible to the disparities, what were those things that impacted their care? And they know so much more after the fact. So we're really trying to empower patients from the beginning in order for them to understand what they need to know going in and based off of that comprehensive Chrysalis model, where it's not just the medical care and breast cancer knowledge, but it's clinical trials, genetic testing, genomic testing, what support resources, how to navigate those financial situations, how to navigate through structuring in our life, because this is now a new marathon that they're going to be on. It's not just they'll be treated and done, but they’ll be living with this for their entire lives.

Then being empowered with that information and education from the jump will ensure that they're not as vulnerable to disparities, then we'll be able to stay on that right track.

Now, both of you are on the planning committee for the African American Symposium. How is the committee addressing the issues we've been talking about and what do you believe Black women need in order to both understand their diagnosis and navigate their healthcare?

Ricki Fairly (20:38):

I also serve on the board of the Triple Negative Breast Cancer Foundation, and we have had a partnership with LBBC for, I think about five or six years, for a long time. And actually with triple negative, I had never been around another woman, and then definitely another Black woman, with triple negative until I attended the LBBC Conference.

We've had a partnership with the annual conference and sort of had a triple-negative track within the LBBC Conference for several years now, and it's been an awesome education platform where we do see new patients coming in and meeting people for the first time, and to be in an environment where you see, “Oh my gosh, you have TNBC too?!” is a great thing.

I think I want to create that same kind of education opportunity and sisterhood with this conference, because it was so helpful to me as a patient because I knew nothing. And unfortunately a day does not go by a day, not one day, where I don't get a call:

“My mom just got diagnosed.”

“My sister just got diagnosed.”

“I just got diagnosed.”

“What do I do?”

And so you really don't know what to do when you're first diagnosed, right? None of us did, Right? So you have this platform to be able to educate, and most importantly, teach people to self-advocate and to stand up because we know our body better than anybody else. And we know when something's not right.

So many young Black women present to a doctor with a lump and get dismissed or the treatment isn't working and they get dismissed. To be able to educate them and give them the voice that they need to have when they're sick and they're not feeling well, and they don't really understand what's going on in their body, but to arm them with information, is such a huge opportunity. I think it's going to be such a great forum. So, so excited about that.

Jamil Rivers (22:31):

Yes. And LBBC has also agreed to have this be an ongoing program, so we're not just one and done this year.

I'm sorry, Ricki, what were you saying?

Ricki Fairley (22:43):

I said, we need it every day. People get diagnosed every day with this disease. Just to have something where they can go, I want to be like the Wikipedia of Black breast cancer, you know what I mean? So people know what can click the box and know what to do.

Jamil Rivers (22:58):

Exactly. Maimah, did you have anything else to add about the symposium?

Maimah Karmo (23:03):

Yeah. I'm thrilled to be a part of this. As an organization, we've asked our Black patients and advocates, “What do they want to see?” And they've always said consistently, they want to see for us and by us Black programming. When you buy a new pair of shoes, I want to buy something new, or when you want to get a doctor referral, who do you talk to first? Your girlfriends. So this is providing a culturally competent forum that's created for us, by us, which is very powerful to build trust, to build allyship and to bridge the gaps in disparities.

But also I've heard Black women say that when they met me or another Black person, you're the first Black person I met who had breast cancer, or who had TNBC or who may have been metastatic. And it's a lonely road we travel.

We're warriors on social media. We do a lot of good work, but when you're alone in your room and you think about who can I trust, it's a very lonely space sometimes for people.

Also, as Black women facing disparities, we’ve got to start being self-advocates and be powerful and be consistent and persistent. And having your sisters around you is one of the most empowering things that you can have for yourself. It lets you know you're not alone. As I met other Black leaders in this space, I'm like, “Oh my God, I have another badass with me.” It just makes you better together.

I think it’s going to be a powerful form for self-advocacy, for education. And also to realize, even if you're early stage, you can't ever stop being vigilant about your breast health. You have to be involved and know the facts. Because I have patients who we help now who are mets patients and they literally all say, I wish I knew this then.

How do we know that “now” versus later on? I think this is going to be a really powerful 360 platform to educate, advocate, form power, support, and collaborate with Black women and to change our outcomes. So I'm looking forward to being a part of it.

Ricki Fairley (24:58):

Unfortunately, Black women get recurrences at a 39 percent rate. Breasty club is not one you want to be in, but when you're in it with the breasty love, it's like intense and we all love each other. And so I'm looking forward to that sisterhood, that comradery, and the love that we're going to spread because it's unconditional and it's awesome. Yeah.

Jamil Rivers (25:23):

Ricki, can you share with us briefly what you take to accomplish with your new organization, Touch?

Ricki Fairley (25:28):

Sure. If I could eradicate Black breast cancer today, sign me up. That's what I'm about. So I really just want to put the platform out and to put resources behind eradicating Black breast cancer, understanding the science, understanding our physiology, and getting the right drugs to change the numbers on mortality. Whatever goes into that, it's everything.

We all talk about early detection and self-advocacy and research, but it's really, how do we change the numbers? How do we make that number go away? And how do we make it either a chronic illness or get rid of it? I have two precious grandbabies that are 1 and 3. I don't want them to speak the words “breast cancer” in their lifetime.

Actually, I tried to get Bella on video saying, “No more breast cancer!” but you know.

It's about all the things that go into that, but driving pharma and our wonderful breast cancer ecosystem to focus energy and passion and learning and knowledge around Black breast cancer.

Jamil Rivers (26:31):

Um, Maimah, any last words you would like to share before we end?

Maimah Karmo (26:35):

I'm really excited. At Tigerlily, we spent 14 years in doing this work, working to end disparities of age, stage, and color, and to explain Black breast cancer is its own disease.

I think for me, the beauty in this work has been that what I've learned in 14 years, I can give to somebody else, who's a sister of mine in one conference, in 14 months. Whenever I learn something, I want to make it better for the next generation of advocates to learn from me. It took us awhile to get here, but now we're here, how do we harness our power to make it better for the next gen of Black woman to collaborate with us, to innovate with us, and to end Black breast cancer once and for all.

Also, the feeling of not being alone is really powerful. The sisterhood I've seen, to Ricki's point earlier, COVID’s really exacerbated and put at the table what's been happening for years, and now we're building solutions that are going to be — to your Jamil— long-lasting, repetitive, growing. And so that excites me. I'm looking forward to it. Thank you all for doing this. Thank you and Cathy and Jean and Jamil and Ricki, everybody. It’s going to be amazing. I can’t wait to see you guys there.

Jamil Rivers (27:46):

Thank you guys for agreeing to be community partners and helping us with this endeavor. Ricki, were you about to say something?

Ricki Fairley (27:53):

Just, I love you so much.

Jamil Rivers (27:56):

I love you guys too. Maimah, Ricki, thank you for having this important discussion with me today and for being great advocates and partners with the African American Symposium.

The symposium workshops will be thematically connected and designed for African Americans with early-stage and metastatic breast cancer. For more information about the symposium, please go to LBBC.ORG. Also remember LBBC has the Breast Cancer Helpline, where you can be matched with someone who has a similar diagnosis. And please check out our closed Facebook groups for support — Breast Cancer Support: All Ages, All Stages and Breast Cancer Support for Young Women. Thank you for being here. And remember, we will get through this together, stay safe and we will talk with you again soon. Thank you.